Disease and Disorders
Last Sunday, a friend saw my colon (:) tattoo on my wrist and asked, “Didn’t that hurt? The inside of your wrist is such a sensitive body part.” I told her that it’s the good kind of hurt. “You know when you just want to feel anything else? When you want pain that you choose instead of pain that you can’t control?” She didn’t know. It became painfully obvious that that feeling was not as common as I’d assumed.
I was never sure if the mental health issues I’ve struggled with were Crohn’s related or kid-of-an-alcoholic related, but then, my siblings have neither Crohn’s nor the same issues. It started with catastrophic thinking. There was the hyperbolic reaction to things, but also the clear feeling that my life would be short. I overreacted to things in my daily life on a regular basis and reacted to flares and surgery with a calm acceptance that I would only live a short life and must cram every experience into a short period of time; this lead to poor choices with bad boyfriends.
Once I’d survived to see the age of 21, I struggled with bulimia. I know that this is ridiculous to most sane and/or healthy people. Years of therapy have lead me to understand that like my desire to choose tattoo pain over the psychic or physical pain that I cannot control, I chose to embrace remission by binging and purging and controlling what went into and out of my body as well as my weight and shape. I’d begun to seek out the low weights that I’d hit when ill. Sure, there were the grossly inappropriate compliments that I’d receive when my guts were in a state of dangerous inflammation, but I also coveted the feeling that I was disappearing, which my flare caused weight losses gave me.
When I’d managed to survive past graduating university and had dated a string of men that Freud would find cliché, I was accepted to a graduate program, 300 miles away. I’d stayed local to get my bachelor so as not to leave my doctors, but now I was uninsured and had nothing to hold me back. 4 months before leaving, I fell in love and left any way. We carried on a long distance relationship for my two years in grad school. I wanted him to dump me. His health, vitality and optimism were so foreign to me. He never seemed to understand that I had a chronic incurable condition with a finite number of treatment options and that getting treatment meant hours and days in line at social services to get funds to pay for medicines that I only got in times of acute disease after visits to the ER.
But he didn’t dump me; not when fistulas poked holes in my labia, not when I told him about the bulimia, not when he attended his first doctors appointment with me and asked the unaskable question of “what if this medicine doesn’t work, what’s next?”, not when the doctor gave the answer that I already knew “hopefully there will be some new treatment in the future, but for now….”
Here are the things that have changed to better my mental health:
- I joined a couple of 12 step programs – though they’re anonymous, I’ll tell you that Overeaters Anonymous, Al-Anon and the 12 Steps for Chronic pain and Illness gave me the freedom to ignore the voices (from others and myself) that I am at fault for my physical issues.
- I moved to a country with insurance for everyone. It’s the law. Everyone has to have insurance so companies can’t turn you down for having a chronic condition and there have to be affordable options.
- I practice faith. I don’t mean that I got religion, I just try to acknowledge and release my fear and hope for the best. I don’t let disappointments take control. I don’t agonize on the future details that I can’t know. These things were unknowable to me in my darkest times. I found the optimism to commit to someone in sickness and in health and that pretty much helped me stop thinking that I could die at any time. Marriage felt like a leap of optimism.
When I had my proctocolectomy this past winter, there was so much that was up to chance. There were more things that could go wrong than could go right. I had 20 years of inflammation gumming up my works and there was no telling what other vital systems might be compromised. But my surgeons – the experts – didn’t know what was going to happen, so I didn’t agonize over it, because how could I know if the experts didn’t know? It was not for me to know or control. I just had to hope for the best and gather my resources, should things go poorly.
When I live in fear or in the expectation that my body should be a certain way, all I know is pain and sadness. For now, I focus on gratitude and any little positive I can find. That said, sadness might take hold again, I’m not immune to bulimia. Battling a chronic illness is an emotional and mental strain and there is no shame in it taking its toll on me. For today, I am grateful that I am physically and mentally pain free and that making healthy choices is yielding results at the moment.
National Suicide Prevention Lifeline – 1-800-273-TALK (1-800-273-8255)
Crisis Text Line – Text “TWLOHA” to 741-741
[Both resources are available 24x7]